I have a general sense that I'm facing life alone with big decisions. I'm living in the family home, which I now own jointly with another relative who lives elsewhere. At some point it will have to be sold. There was a lot of paperwork following my father's death and both before and after he died, I was let down by different firms of solicitors.
Meanwhile, I'm unhappy about the current disability campaign to separate disability support into a separate ministry/service/department, just as the government has been moving towards merging health and social care.
For those for whom the two are not entwined, this makes sense. If your disability/impairment is not a health issue, why would you want it treated as such? But for some of us, it entrenches something we'd desperately hoped would be changed and thought was going to be. I'm gutted.
Let me tell you of three people. My father, my grandmother, my friend's father. All three had both physical and mental chronic health issues before and after they grew old, and all three developed dementia.
My grandmother
My grandmother got things like meals on wheels, and in those days you could raise a family on one wage so there were other women around to help her. Then she went into the asylum. It was a bit bare, but she was well cared for and very clearly not distressed other than by her delusions that she was still in her own home leading to lightly grumbling about cooking the dinner for her husband or whatever.
My father
Dad was 'care in the community' and had savings, so he had to pay for his own care. Despite my pleading, social services wouldn't even offer advice on his care. I was left high and dry. I did my best, and as he worsened, he could afford a bit of paid care. Then he went into a care home, which cost a lot. It looked fancy with nice curtains and an en suite in his room not a nightingale dorm, but he was actually no better looked after.
Then I moved him to a nursing home for more intense care when he got worse. I managed to move him whilst the home's dols application was being processed, so they couldn't stop me.
In the nursing home, nothing moved at all on the promises to assess him for NHS continuing care. He was neglected and shouted at etc. In the end, I shovelled him in a taxi and brought him home and the neighbours helped me. I researched and drew up a shortlist of nursing homes for end of life care.
I found him on the floor one day, unhurt and demanding a cup of tea. I called the ambulance and was told if they took him to hospital, I could get 6 weeks free care whilst I checked out the nursing homes. At the hospital, I expressed concerns about some health issues the care home hadn't informed me of and that I was concerned about and they offered to admit him.
Once admitted, he had an accident rendering him unable to walk and then caught an infection. He died a little while later. (Of the dementia, not the accident.)
All the way, I had to advocate and fight for him. It was heavy going.
My friend's father
Now to my friend's dad. He didn't have money and was dependent on the state and his family. They did their best but the powers that be played pass-the-parcel. No one had funding. Back and forth he went, care homes, psychiatric units, general hospital wards. You care for him, no you care for him.
In the end my friend was trying to get NHS continuing care funding for a nursing home. The NHS manager did her best to argue no, he needed social care not health care and the social work manager did the opposite. My friend won and got him into the nursing home, where he died a few weeks later.
In the last 12 months of his life, he was moved 10 times. I'm not sure whether 7 or 8 institutions. Pass the parcel.
The implications for me
I have no children, no partner, no relatives same age or younger, no non-disabled relatives. I have few friends and those that would be capable of being an attorney lack the energy or ability.
I had hoped and prayed that the government would go ahead with merging health and social care, but now there's a disability movement fighting against it and what I feel is fear and despair.
I understand why people are fighting for it, but my impression is that they're not, for the most part, people who, like me, could find ourselves captive in a hospital on a section or captive in a care home under a dols order. There's no parity of rights or quality of life between NHS and the community. Each has its deficiencies.
I want a single set of rights, a single standard of care, 'parity of esteem'.
I don't have the emotional energy to fight it. I barely have the emotional energy to get out of bed in the morning. Already, I cry and cry and cry over this and lots of other things.
Having said that, who knows what the future will bring, but seeing the positive side isn't easy when you're this depressed.
I'm a remainer. I am devastated over Brexit. I say that whilst respecting that many leavers feel distressed by the possibility we may not leave, so I'm not trying to start a pro/anti Brexit battle here, just saying I feel distressed and bleak.
It's not all bad. Some people I know elsesite sent me some Christmas presents.
My ataxia is better than it was although I'm still waiting to see my neurologist since I was referred in October. Maybe I'll be symptom-free by the time I get to see him!
I was scared to go out because I was falling over or getting knocked over every third or fourth time I left the house. It's less often now. But on the other hand, having now had three broken bones losing my balance indoors, I'm getting anxious at home. Fortunately, I've got good neighbours and also a keysafe, which the 999 call centre has the code for.
So there you go.
In short, I'm depressed, I feel lonely, I'm scared to go out and scared to stay in and scared to do DIY in case of falls. My hearing makes socialising anywhere with background noise just fakery.
And if you told me anyone here doesn't know what it's like to feel bleak, I wouldn't believe you. It doesn't matter what your political views or whether your impairments are mental, physical or both, you've all had times when the world seems tough to face. Thank you for being there. It's not the replies that matter, it's just being able to say this.
